We took N to the Bristol Royal Children's Hospital today to see the Orthopaedic Surgeon.
The plan is to try Botox injections in her feet and ankles, to try to relax the muscles enough to get her feet straight, so she can walk on her Kaye Walker again. None of us, parents or surgeon, want to get in to actual surgery at this point - apparently you can move tendons around to pull the foot in different directions and stuff like that; but we are going to try this first, for obvious 'not wanting to put our child through possibly futile elective surgery' reasons.
So. The appointment was pretty positive. The plan is to inject Botox in to three muscles around each foot and ankle. This will involve her being knocked out with a light anaesthetic. Then we have two weeks doing stretching and moving as much as possible alongside her daily routine - swimming if we can manage it. Then she goes back to Bristol to the Orthotics people* and is cast in plaster again on a weekly basis for a bit to try to get the feet straight, hopefully in 'walking casts' which will allow her to get around on the walker.
Then she should get AFO splints again, and at that point can start to go in her standing frame again every day.
Standing and walking independently have a huge number of benefits alongside the obvious 'it's nice to be able to do it' ones. It's good for the internal organs, digestion, blood flow and bone density. It also helps language and cognitive development in children because you use a different set of words of you move around than if you are sat in one place. Also, social dynamics. It's rubbish if you can't run round with your friends.
We have asked for the orthotics to be done at Bristol because our experience with Musgrove was so poor last year. Thinking back, actually, I haven't heard back from the department manager, who was supposed to be reviewing what exactly went wrong with N's treatment, and letting me know the results of her investigation. Quelle surprise.
All in all, a reasonable outcome.
On the way home we stopped to buy chicken food in Bridgewater and then I had seizures all the way home over the hill. A nice scenic route for it to happen, anyway.
This weekend I plan to rest, drink cocoa, design some decking and play Carcassonne.
For today, that is all.
* Don't confuse them with Orthopaedics, they're different, they do casts and splints and things like that. Truss, I think, too, if necessary, which I find intrinsically humourous.
Friday, 15 January 2016
Wednesday, 13 January 2016
Me: Why is there a hand axe on the chest of drawers in the bedroom?
B: I used it to reattach the Marital Aid* to the wall when it fell off. I thought that the rubber mallet would bounce off too much and it would mess up the rawl plugs.
Me: < no words >
* Handmade by a Very Clever With Wood friend, in order to save our marriage, so that B has somewhere to hang his clothes up other than the bedroom floor.
Monday, 11 January 2016
For those of you who used to follow ducking for apples, Pa would have been ninety-eight today. He's been gone seven years now and I still miss him like hell.
Currently I am repeating his mantra "Never mind, we'll all be dead in a hundred years" at regular intervals. His other memorable piece if advice was to think of a matchbox when you can't sleep, which I've never really managed to get the hang of, but I thought was worth mentioning in case it's of use to anyone else.
Things that are happening:
- B's uncle has died. Although they were not close in latter years, this is already causing family tension that I am not going to mention any further because its tedious and emotional and disrespectful to him.
- N is off to Bristol on Friday for the orthopaedic surgeon to have a look at her feet and assess her for botox treatment.
- Her breathing at night needs further assessment because there appears to be a CO2 build-up that isn't great.
- Best Christmas Present award goes to the Wii Zoo game that has been on constantly for the last three weeks. We have pet giraffes now. They are pink.
- It's very wet and our new ducks are having sex in the puddles.
Fit-wise I'm plodding along. They are less frequent if I'm not stressed or tired. Ha.
For today, that is all.